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Crohn's Disease Forum » Surgery » Planning for an upcoming resection...help/tips PLEASE!


11-14-2013, 07:36 PM   #1
Crohnsmomof3
 
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Planning for an upcoming resection...help/tips PLEASE!

Due to a recent CT scan, my doctors found that I have fibrostenotic disease in my TI. With a partial blockage. So, I am scheduled for resection surgery on December 13th. I have had the disease for over nine years and thought I would be one of the lucky few to avoid surgery for the first ten years. Nope.

Anyway, looking for advice in planning or preparing for the upcoming surgery. What did you find helpful for your hospital stay? I am married with three young boys (7,4 and 2). So things will also be interesting when I come back home. Any suggestions are welcome.

Also, how long did you take off of work? I teach, so it is not a heavy labor type job. However, I want to make sure I have enough time to rest.

Thanks in advance for the replies. A little nervous and anxious, but in misery now so looking forward to taking steps to feel better.
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Leslie

Diagnosed: 2004
Abcess: 2011
TI resection 2013 (60 cm of small bowel)

Current: Stelara, Methotrexate, Questran, B12 injections, metoprolol, sertraline

Past medications: pentasa, remicade, humira, cimzia, imuran, prednisone, entocort, 6mp
Adverse reactions: Entyvio, Remicade, Humira, Cimzia, Imuran, 6MP

Diagnoses: Crohn's Disease, Iron deficiency Anemia, B12 Anemia, Osteoporosis, Migraines, Anxiety
11-14-2013, 11:07 PM   #2
Crohn's gal since 1989
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Count on six weeks to recover at home.

Stock up on jello and ginger ale for your hospital visit. They pushed back my surgery 3 times, so I was on clear fluids and nothing by mouth after midnight for surgery the next day. Then told me well after the dinner hour each day that I could have clear fluids, but they did not have a tray for me.

If you get the morphine pump make sure you pump it a few times (you're allowed a dose every 5 minutes.). Because you will wake up in pain if you don't as there is no automatic pain relief.

Take a pillow from home & toothbrush

Take your slippers, books, iPod, iPad, other entertainment
__________________
Bonnie

Diagnosed 1989
Asacol,Pentasa and Entocort (didn't work in 2005 and didn't work now)
Done with Prednisone 09/07/13
Azathioprine (Imuran)150mg no longer working
Developed allergic reaction to Humira injection!
Currently trying Remicade with Methotrexate
Still trying to get into remission!

Ileocecol resection surgery
September 14th, 2013.
55cm small bowel removed!
11-15-2013, 04:05 AM   #3
wingman
 
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Location: Albury, New South Wales, Australia
Count on six weeks to recover at home.

Stock up on jello and ginger ale for your hospital visit. They pushed back my surgery 3 times, so I was on clear fluids and nothing by mouth after midnight for surgery the next day. Then told me well after the dinner hour each day that I could have clear fluids, but they did not have a tray for me.

If you get the morphine pump make sure you pump it a few times (you're allowed a dose every 5 minutes.). Because you will wake up in pain if you don't as there is no automatic pain relief.

Take a pillow from home & toothbrush

Take your slippers, books, iPod, iPad, other entertainment
G,Day I am 61 now i have had half my Bowel taken out a resection 3 foot intestine out Gang Green 4 Disc,s out of my Back 3 Adhesion opp,s i am sick of being Sick Gall Bladder out Last Year a Bad surgeon did my Back left me in Cronic Pain 24/7 and a Malabsorbsion Syndrome I have been on Questran Lite 2 sachets in Orange Juice Thank God for this Stuff Used to have B12 Inj once a month ,Now stopped 200Mg M S Contain and 2 x 30Mg Oxy Codone Supp,s Valium Is there any one else out there with my problems Please Reply ??
11-15-2013, 06:59 AM   #4
yellowamc
 
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I remember apple juice was like drinking pure heaven lol. and I wasnt so lucky on the morphine button on my second surgery they did pills instead, made me sad that stuff was great lol. O and when they say u can eat solid food in the hospital um don't do the meat loaf just sayin ick.
11-15-2013, 09:04 AM   #5
Crohn's gal since 1989
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I remember apple juice was like drinking pure heaven lol. and I wasnt so lucky on the morphine button on my second surgery they did pills instead, made me sad that stuff was great lol. O and when they say u can eat solid food in the hospital um don't do the meat loaf just sayin ick.
For me it was beefaroni! the macaroni was so over cooked that it was mush! I don't know if they didn't know how to cook, or if they were aiming for a soft diet as at 44 I was the youngest patient by a significant # of years on the GI floor!
11-15-2013, 10:11 AM   #6
yellowamc
 
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For me it was beefaroni! the macaroni was so over cooked that it was mush! I don't know if they didn't know how to cook, or if they were aiming for a soft diet as at 44 I was the youngest patient by a significant # of years on the GI floor!
Ya I know what u mean, I guess they don't want u to feel to good lol by feeding u good food. I was just in the surgical but that's funny I was 44 also for my second surgery, 37 for the first one.
11-15-2013, 10:42 AM   #7
Crohn's gal since 1989
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Ya I know what u mean, I guess they don't want u to feel to good lol by feeding u good food. I was just in the surgical but that's funny I was 44 also for my second surgery, 37 for the first one.
This was my first surgery at 44. I'm an anomaly, my GI forgets all the time and keeps referring to it as my second surgery, but the only other surgery I've ever had was a tonsillectomy at 22!

I've been very lucky that my Crohn's hasn't impacted my life too much. I'm hoping this resection buys me a long symptom free remission!
11-15-2013, 12:51 PM   #8
Crohnsmomof3
 
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Thanks all. This is my first resection (and real surgery), I m 36. I also had a tonsillectomy (at 19).

Good advice on the food. thanks!
11-15-2013, 05:45 PM   #9
yellowamc
 
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well good luck, im sure everything will go smooth for you.
11-15-2013, 05:48 PM   #10
yellowamc
 
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This was my first surgery at 44. I'm an anomaly, my GI forgets all the time and keeps referring to it as my second surgery, but the only other surgery I've ever had was a tonsillectomy at 22!

I've been very lucky that my Crohn's hasn't impacted my life too much. I'm hoping this resection buys me a long symptom free remission!
That's awesome, I hope so too. Im hopin to actually see remission some day lol.
11-16-2013, 01:54 PM   #11
sticksmarch
 
Join Date: Jul 2012
Location: Florida
I am also 36 with my resection scheduled for dec 13th. First surgery for me as well, and any advice is greatly appreciated. My mom, sister and husband will help out with the kids.
11-16-2013, 08:12 PM   #12
Crohnsmomof3
 
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I am also 36 with my resection scheduled for dec 13th. First surgery for me as well, and any advice is greatly appreciated. My mom, sister and husband will help out with the kids.
Wow! We need to keep in touch. At least for support. How old are your kids?
11-16-2013, 09:07 PM   #13
slightlysilly
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I'm going in on Monday for an ileocolectomy. I'm mostly concerned about my 10 year old son who is a bit on the anxious side. I'm fine with the surgery at the moment, I'm in so much pain and am taking so many pain killers... it's so time. This is also my first surgery. I'm 39 years old, I've been diagnosed for about three years.

I have my toothbrush, toothpaste, brush, contact lens stuff, glasses, kindle, phone, lip balm, pajamas and slippers and clothes to come home in. I can't think of anything else. I'm mostly wanting to make it to my son's soccer tournament on Saturday. I know that's a lofty goal, but I'm willing to try!

Good luck to you! I'll let you know how it went for me once I'm up and about!
__________________
MAURA

Diagnosed with Crohn's Disease - 11/03/2010
Diagnosed with Celiac Disease 03/10/2011
Diagnosed with med induced lupus due to Remicade 01/2013
Was on Humira, didn't improve anything.


Currently on:
Cimzia
Pentasa
Buckets and buckets of Ultram and Vicodin.

Ileocolectomy scheduled for 11/18/2013



My Blog: www.gimpycolon.wordpress.com


11-16-2013, 09:27 PM   #14
sticksmarch
 
Join Date: Jul 2012
Location: Florida
Good luck Slightlysilly. I hope you make it to your son's game next week. I definitely think a positive outlook helps with healing.

Crohnsmomof3, my girls are 7 and 9. I never post on here, but it was too freaky that we are the same age going in for our first resection on the same day. Mine is just a stricture and my 6mp really helped out with my inflammation. I've been putting off surgery since August. Are you watching what you eat to prevent a full obstruction?
11-16-2013, 10:05 PM   #15
Crohnsmomof3
 
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I'm going in on Monday for an ileocolectomy. I'm mostly concerned about my 10 year old son who is a bit on the anxious side. I'm fine with the surgery at the moment, I'm in so much pain and am taking so many pain killers... it's so time. This is also my first surgery. I'm 39 years old, I've been diagnosed for about three years.
I wish you all the best on Monday. Thanks for the list too. I am starting to write some things down to take with. I understand about the pain, it can be really hard to deal with for long periods of time. It's funny, I am also thinking about my kids (typical moms). Let me know how it goes. I am sure all will be fine. Hope you make it to the game Saturday!
11-16-2013, 10:12 PM   #16
Crohnsmomof3
 
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I never post on here, but it was too freaky that we are the same age going in for our first resection on the same day. Mine is just a stricture and my 6mp really helped out with my inflammation. I've been putting off surgery since August. Are you watching what you eat to prevent a full obstruction?
I just joined a month ago, it has been a really helpful site. It is great discussing these things with people who can actually understand what you are going through. It is really interesting that we are the same age and having the surgery on the same day. And you also have young kids.

I am watching what I eat, when I actually feel like eating. There are days I go with ensure instead to get the calories without the pain. Low residue is the plan until surgery. My surgery is more of a surprise. I knew I was feeling bad, but didn't know how bad it really was. I was getting ready to start methotrexate.
11-16-2013, 10:20 PM   #17
Crohn's gal since 1989
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Good luck Slightlysilly. I hope you make it to your son's game next week. I definitely think a positive outlook helps with healing.

Crohnsmomof3, my girls are 7 and 9. I never post on here, but it was too freaky that we are the same age going in for our first resection on the same day. Mine is just a stricture and my 6mp really helped out with my inflammation. I've been putting off surgery since August. Are you watching what you eat to prevent a full obstruction?
My girls are 8 next month and 10 in February!
11-17-2013, 01:19 PM   #18
Mimzim
 
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I took my PJs, but I never put them on, I was in too much pain.
I took Oil of Olay facial cleansing wipes, this was my favorite thing I brought.
I brought my IPad Mini and my Iphone, I loved being in touch with my family when they weren't there.
I wore what I wore to the hospital home, since I only wore it for an hour.
I hated the pain killers, but you do have to use them.
A normal toothbrush and toothpaste.
Extra Spearmint gum was my other favorite thing and my surgeon recommended I chew it since it wakes up the digestive system.
Ginger ale, apple sauce, graham crackers, saltines, those are all good.

I explained to my children I was going to get better, because they knew I was sick. They handled it well and looked forward to me coming home. They also became little helpers. My oldest would brush my hair when he would visit and my youngest would do our nightly routine of kisses. It was very special and when I was home they liked taking care of me, since it is usually me taking care of them.

I wish you all the best surgery and recovery!

Donna
Crohns, dx 2004
Asacol
2006-2013 remission
2010 given three year reprieve from colonoscopy
Summer 2013, developed stricture in that three years, asymptomatic
Resection, Sept 20, 2013
Presently in remission
Taking Lialda as a precaution until colonoscopy in January and vitamins for now
11-17-2013, 10:01 PM   #19
Crohnsmomof3
 
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I took my PJs, but I never put them on, I was in too much pain.
I took Oil of Olay facial cleansing wipes, this was my favorite thing I brought.
I brought my IPad Mini and my Iphone, I loved being in touch with my family when they weren't there.
I wore what I wore to the hospital home, since I only wore it for an hour.
I hated the pain killers, but you do have to use them.
A normal toothbrush and toothpaste.
Extra Spearmint gum was my other favorite thing and my surgeon recommended I chew it since it wakes up the digestive system.
Ginger ale, apple sauce, graham crackers, saltines, those are all good.

I explained to my children I was going to get better, because they knew I was sick. They handled it well and looked forward to me coming home. They also became little helpers. My oldest would brush my hair when he would visit and my youngest would do our nightly routine of kisses. It was very special and when I was home they liked taking care of me, since it is usually me taking care of them.

I wish you all the best surgery and recovery!
Thanks for the tips/list ideas. I have talked with my boys as well. My two older ones know that my stomach has a boo-boo in it. I told them that they are going to take it out and I would feel better. The tricky part is that my surgery is about three hours away from where I live. So, I will probably not see them until I get back. The last time I was in the hospital (delivering my third/also found abscess), it was a local hospital. It was pretty hard on my middle boy. He is now almost five, but really attached to his mommy. And I will miss them all.
11-28-2013, 10:11 PM   #20
Crohnsmomof3
 
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Well, they have changed my surgery date to December 6th. Someone else needed the slot on the 13th. So sticksmarch I will let you know how it goes. Not ready for it to be a week away, but here we go.
11-29-2013, 10:14 AM   #21
sticksmarch
 
Join Date: Jul 2012
Location: Florida
Oh wow! Good luck crohnsmomof3. Wishing you all the best and a speedy recovery
11-29-2013, 10:40 AM   #22
guitarjamie03
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I would say to walk as much as you can. I had a resection in February of this year and the best thing for me was to walk. Don't strain or over do yourself though. I wanted to start walking the day of my surgery, but the pain was too much. I had an issue with the pain management department (long story). But once, I was up and moving I could not stop walking. Even when you get home, take time to walk even if it is just down your street, to the mailbox, or even around the house a few times. The more you walk, the more you can get things moving again!

I also agree with everyone else on what to bring with you. You may also want a robe and a small fan to use at night to cancel out some of the noise around you. Defiantly bring some movies to watch, or music to listen to. You will need something to pass the time when you are not "asleep." (who sleeps in a hospital!

Best of luck on your surgery!! Your going to do great!
12-07-2013, 06:41 AM   #23
Crohnsmomof3
 
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Surgery yesterday went well. They had to remove 25 cm of small intestine in two parts. So, I have two repaired segments. Today is rather painful, however tolerable. They had me up and walking too. It wasn't horrible, however it really tired me out!

Thanks all for the list help!
12-09-2013, 06:09 AM   #24
Crohnsmomof3
 
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Turns out it was about 100 cm removed. the 25 was the second spot they had to remove. It sounds like a lot to me. Although the surgeon is not quite sure about exact length, as in the TI areas were folded upon itself. So it was hard to measure.

What amounts did you all have out for your resections? Is this a lot or normal?

Hospital stay is rough, I am hoping to turn a corner soon.
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